What is Neurodiversity?

To me, neurodiversity is the idea that neurological differences like autism and ADHD are the result of normal, natural variation in the human genome. This represents new and fundamentally different way of looking at conditions that were traditionally pathologized; it’s a viewpoint that is not universally accepted though it is increasingly supported by science. That science suggests conditions like autism have a stable prevalence in human society as far back as we can measure. We are realizing that autism, ADHD, and other conditions emerge through a combination of genetic predisposition and environmental interaction; they are not the result of disease or injury.

At the same time, we are identifying diseases and injuries (physical and environmental) that will produce brain injuries whose effects look very similar to autism and other differences. Acceptance of neurodiversity certainly does not include passive acceptance of such injury and insult, though we should unconditionally accept individuals who are so impacted.

Smallpox is a disease that attacks healthy people; one can seek its eradication by understanding its foundations and planning an attack at that level. Autism – as a lifelong part of otherwise healthy person – may be understood at that basic level but if it’s an innate part of the person it’s not subject to attack and cure in the same simplistic manner. That’s why the remediation of its medical complications is such an incredibly complex challenge.

Indeed, many individuals who embrace the concept of neurodiversity believe that people with differences do not need to be cured; they need help and accommodation instead. They look at the pool of diverse humanity and see – in the middle – the range of different thinking that’s made humanity’s progress in science and the creative arts possible. At the edges they see people who are functionally crippled by being “too diverse.” When 99 neurologically identical people fail to solve a problem it’s often the 1% fellow who’s different who holds the key. Yet that person may be disabled or disadvantaged most or all of the time. To neurodiversity proponents, people are disabled because they are at the edges of the bell curve; not because they are sick or broken.

As an adult with autism, I find the idea of natural variation to be more appealing than the alternative – the suggestion than I am innately bad, or broken and in need of repair. I didn’t learn about my own autism until I reached middle age. All those (pre diagnosis) years I assumed my struggles stemmed from inherent deficiencies. Asserting that I am different – not defective – is a much healthier position to take. Realizing the idea is supported by science is even better.

To many neurodiversity proponents, talk of “cure” feels like an attack on their very being. They detest those words for the same reason other groups detest talk of “curing gayness” or “passing for white,” and they perceive the accommodation of neurological differences as a similarly charged civil rights issue. If their diversity is part of their makeup they believe it’s their right to be accepted and supported “as-is.” They should not be made into something else – especially against their will - to fit some imagined societal ideal.

The difference – and this is a big sticking point for neurodiversity opponents – is that racial or sexual orientation differences do not functionally disable a person whereas neurological differences can. That reality makes this situation much more complicated.

It’s also worth noting that neurodiverse people generally look just like anyone else. Therefore, when we act in unusual or unexpected ways we may elicit unwanted negative responses from an unaware public. For that reason it’s important for all of us who are different to learn the basics of getting along in neurotypical society. Some see this as unacceptable compromise but I see it as recognition of an unchanging (or very slow to change) reality.

There is no question that neurodiverse people have brought many great things to human society. If those achievements were indeed facilitated by neurology it logically follows that an attempt to “cure” future disability by eliminating our differences would be tremendously harmful to humanity.

There’s also no question that groups homes and other institutions are filled with people whose gifts remain hidden, and whose differences prevent them from living on their own. Some of those people have differences that make them act self destructively, or act aggressively toward others. The roots of their problems remain poorly understood but we cannot deny their existence alongside those who are gifted by another version of what may be called “the same difference.”

Those folks deserve more than understanding. They deserve meaningful help. I don’t think that’s inconsistent with the ideals of neurodiversity.

Neurodiversity opponents look at those who are disabled by difference and say it’s wrong to attribute that to “normal variation.” They demand a cure. Unfortunately, as the evidence for neurodiversity accumulates, it seems increasingly likely that an overall cure for neurological difference is not possible, and if the diversity is at the root of certain people’s achievements, it’s not desirable either.

So what’s a progressive society to do? How do we help?

I believe we can relieve the burden of neurological disability without altering the essence of the person. Early intervention for speech and behavior is a prime example of this today. In some situations, society can change to make homes, parks and workplaces more accommodating. At the same time we can develop therapies to help us live our best possible lives. Finally we can change attitudes toward people who are different so that they are respected, valued, and made to feel part of the community of man.

If we accept that a neurodiverse world is a good world we will have made much forward progress in our thinking. If only it were that easy!

However you feel about neurodiversity as a concept, neurological disability is very real. There is no question in my mind that society has a duty to relieve the suffering that disability causes, and help disabled people to live their best lives. I like to think most people agree with that general ideal. The real question is how best to get there.

We have made very little progress developing treatments or therapies to remediate the worst effects of neurological difference. We still don’t know much about how different neurology impacts the rest of our body systems, or our overall quality of life as we age. That – to me – is a great tragedy for our generation. By thinking of conditions like autism as “diseases that need to be cured” we have followed a research path that has led to greater understanding of certain details but precious little that actually helps the broader autistic population.

I think it’s time for a change of direction. Instead of spending most of our budget on basic genetic and biological research let’s shift the priority toward applied research to help the people living with neurological difference today. Those people have a tremendous range of concerns and problems to address so the scope of needed work is broad.

At the same time let’s put more effort into environmental research – studies that will help us understand how we may be poisoning people and creating damage that mimics (but worsens) natural variation.

If neurological differences are indeed naturally occurring, research into foundation level cures for those differences will not be terribly productive. Having said that, we should acknowledge some real breakthroughs in identifying genetic variations that lead to major disability with no known corresponding benefit.

The identification of those mutations and exploration of causes is a major scientific achievement. We have not yet translated that work into beneficial therapies but I see the promise it holds. I certainly believe research like that should be continued though I also believe our priorities must shift.

Previous campaigns to accept diversity in race or orientation were simpler in comparison to the upcoming struggle for neurological equality. In them, all we had to change were beliefs and attitudes. With neurodiversity we must change beliefs at the same time we find ways to solve significant functioning problems.

After many years of struggle it’s against the law to discriminate against someone because of race or faith anywhere in America. Unfortunately we have not come that far in other areas. It’s still legal to fire someone for being gay in many states. People who act different by virtue of their neurology have no protections other than those general ones afforded under the Americans With Disabilities Act.

The task of changing societal attitudes is complicated by the fact that neurological difference is invisible. It’s hard for the general public to embrace an unseen thing that produces unexpected behavior with no obvious explanation beyond “acting bad.” Some people think neurodiversity acceptance means accepting what are otherwise socially unacceptable behaviors in the name of embracing difference. I don’t agree with that idea at all. All of us need to act right (ethically, morally, humanely) toward one another.

I think much opposition to neurodiversity stems from the (misguided) notion that acceptance of neurodiversity implies opposition to basic scientific research, or opposition to developing tools to make the lives of disabled people better. I don’t think either thing is meant or implied.

We can accept that neurological difference is a natural part of us while still working hard to minimize or eliminate its negative effects. At the same time we should recognize and celebrate the very real benefits difference confers on many of us, and embrace people as they are because that is reality. As with any disabling difference, a parent may wish things were otherwise, but they’re not and unconditional acceptance of our loved ones is the healthiest way forward.

I believe acceptance of neurodiversity backed up by support for solid research into how we can be our best (least disabled, most productive, etc) is the most positive position those of us who are different can take. I celebrate all the people who fight for the rights of people who are different, and I look forward to the further fruits of those efforts. Meanwhile, I will use my own differences as I always have – to make a living doing those odd things I do better by virtue of my neurology.

John Elder Robison is an adult on the autism spectrum, and parent of an adult son with autism. He's currently Scholar In Residence at the College of William & Mary in Williamsburg, VA. He's a member of the Interagency Autism Coordinating Committee of the US Department of Health and Human Services, and he serves on many other neuroscience related boards. The words expressed here are his own. He's the author of three books - Raising Cubby, Be Different, and Look Me in the Eye and numerous articles. Find him online at www.johnrobison.com

Technology and its applications today are new and not well understood by MAN.

Also, much of science today is based on the purely mechanical(physical) aspects of the human machine, and with a great deal of arrogance and ignorance you freely discount any other possibility(also ethe political and economic considerations).

What is happening today is the commercialization of all life. Not just MAN, but all life. Disposable, inferior is how some in science see it today. They like to claim, "I have made a machine that can create a play, a song, or play chess". Well thats very nice, now can it pick up may laundry from the cleaners, and tell it to have dinner ready by 6pm please.

Very good at making machines that can exceed 1 aspect of human ability, but when you consider the diversity of ability within the human condition, no machine comes even close. When you consider that all events that occur around you are recorded even if you are unaware, some people live to be 100+ years. How many different senses are in play, recording both seen and unseen for that period of time? No machine comes close to that amount of storage.

Then there are these imbeciles who believe MAN wil someday simply upload and download knowledge, like the movie "the matrix", and they are really quite serious about it. That to me displays their complete lack of understanding of how the mind, and the spirit interact. Il assume there are some in neuroscience today that can being to understand how that is in fact impossible without utterly dstroying the self, and for some, that is precisely the point, forced conformity.

What is particularily concerning is that "progressives" are attempting to "build" a civilization based on all of this flawed science. It must by default, fail. Problem is they are comitted, they have comitted crimes, and their belief is unfallible, very much like the religious today.

If MAN is to coninue as it is today, MAN is a threat to every other living being in existence. What would my motivation be to further anyones understanding, and not simply allow you to destroy yourselves in pursuit of delusional and infantile ambitions?

Couldn't agree more. Current official definition of autism is so desperately wrong that all studypapers on the subject render inconclusive, contra-dictionary results.
Because too many get a false positive for autism the pool of research subjects is hopelessly polluted with people which have autistic symptoms but don't have autism which is the main cause why this idea escapes the professional community. Rainman is a leading example of how they got it wrong and still do, not having autism but agenesis of the CC.
The only solution imho is to scrap ASD as it stands, do a large MRI study of all diagnosed on the spectrum and try and find a communality which applies to the largest part of it.
That should be the baseline for a new definition.

that the greatest animosity regarding the acceptance of Neurodiversity is with parents of offspring with severe disabilities? It's because they are being told they don't love their children. I think you are attempting to "bridge the gap" with the duality of acceptance while still regarding science.

Science has accomplished some minor, in the overall scheme of things, goals. But to the parent's to whom it made the difference, and the children who will no longer be environmentally poisoned, it is astounding. Science has spent billions, and still give us the shrugged shoulders as to what "causes" the vast majority of people's autism because it IS a difference. But for kids who might have been poisoned by valproic acid, by thalidomide, even possibly mercury---things have changed. For the kids whose own bodies work against them in cases of Phenylketinuria, Galactosemia, special diets can stop the damage. For some kids, discovery of certain forms of epilepsy (my mind is going blank...oh wait, here...http://www.ted.com/talks/aditi_shankardass_a_second_opinion_on_learning_disorders.html). And we have NO idea what environmental influence, pregnancy complications, or many other things yet undiscovered do to influence the fetus's development. To say, "Just accept us" and negate all science has done and could possibly do is so naive to those parents. We have proof of the cause of a fraction of disabilities, it isn't time to stop and accept all the rest, especially for the parents who yearn to communicate with their children, who want to know the reasons why they appear to suffer.

Maybe that's it. Parents of severely disabled kids want to take away their children's suffering, because that is what their children's behavior seems to be telling them, that something is wrong. Neurodiverse advocates want to take away their own suffering that is caused by others.

I don't have any answers. I'd love to see my son be accepted as the 1% who change things, and I am able to have that dream. Many parent's can never have that dream, and they are being told they are being selfish for wanting it...but that fragile human institution of science tells them there are possibilities--few and far between, but they are there.

Oh, heck, I don't know. I just wanted to chime in. My son is so mild he would be considered SCD by the DSM 5. But still, he has suffered, too.

If more people like John had the courage to stand up for who they truly are, society would be more open to the world of autism. His book, Look Me In the Eye, was really eye opening to me! This man reminded me so much of my brother, who committed suicide at age 21, without ever knowing why he was different. My husband and boys are also aspergians. Thank you so much for making a difference in our lives, John, by sharing your stories and insight!

I was diagnosed as an adult with ADHD and Asperger's. I have a high IQ, so the ADHD didn't get noticed in school.
I knew I was different, but also knew everyone else was different in their own way. I had poor social skills while being great at reading, math, & science. I wished I knew how to talk to girls the way some other guys did, but I never saw it as something wrong with me.
Now I'm proud to be an Aspie; NTs act so irrationally when they focus on doing what their social group wants rather than what is right.
Some things like low frustration tolerance and sensory overload (like high-pitched loud sounds) are not things I'd choose to have however I can arrange my environment so they are infrequently an issue.

I also think neurodiversity explains much of ADHD and Asperger's. Robert Moyzsis (one of the early human genome project researchers) showed higher rates of a DRD4 allele in people outside Africa. People who are restless and fearless are more likely to travel and populate the world.

Asperger's was likely more of a detriment 10,000 years ago than it is today. Interrupting and questioning authority might get you detention today, but 10,000 years ago it could get you killed or banished; both likely to remove you from the gene pool.

I have aspergers. I also am dyslexic, and have no minds eye. I have about zero emotional connection with the past. (Does that last thing even have a diagnosis?) I am working on a book, the seeds of which can be found by entering the two words orwells boot into any search engine and then reading the first article that comes back after paid links. It will usually be under factotum666. Follow the links to xfoolnature.org

The reason to do this is so that you will understand my position that so many people throw words around as though they have meaning, and actually are just sounds that make people feel good, and if acted upon lead to waste time, and often in a destructive manner. For example:

"There is no question in my mind that society has a duty to relieve the suffering that disability causes, and help disabled people to live their best lives. "

"there is no question" Also no humility. God has apparently given this man omniscience. Maybe that is part of his neurodiversity

"Society." Wow. Which society? Defined by who? The tea party? The Democratic party? The catholic church? Wall street? There are still delusional people who believe that a thing like "society" exists and has meaning?

Suffering? Defined by who? How much? How much relief? Maybe we should give everyone A's in school so as to relieve their suffering from poor grades. I am not sure how to tell you this Mr. Robison, but life is defined by suffering. Consider this. I am ugly. Girls will not have sex with me. It is up to society to provide me with virgins, or at least girls so that I can have sex.

And then there was "duty" Another word devoid of meaning, unless you count a legal duty. Now there is a can of worms.

And finally we have "best lives" So now Mr. Robison is going to whip out his best-o-meter wave it over someone, and it will provide a printout of everything that he needs to do to have his "best life". This man truly is GOD --- AT LEAST in his own mind. I think that there is neurodiverse term for that. Megalomania. or God complex

I agree that a lot more people (not the imaginary concept of 'society' but actual people) should be made aware of the range of what constitutes humanness. But ideas like this that are worse than useless are not going to be of help to anybody except government bureaucrats lusting after ever more power.

Ultimately what is a "difference" and what is an illness or disability is heavily dependent on the opinion of society regarding the subject of dispute. Social acceptance implies that the condition is a "difference", while non-acceptance implies that it is a "disease". This is a central issue in the diagnoses of mental disorders, as even the legitimacy of "mental illness" has been regularly attacked due to the influence of society on the meaning of mental illness. Even if the DSM asserts that a mental illness requires distress, disability, or dysfunction to qualify as a mental disorder, there is no doubting that that they are under the influence of social norms.

Homosexuality has been de-listed with contemporary controversy from the DSM from the third edition onwards, after heavy theoretical scrutiny and the campaigning of gay recognition advocates. As homosexuals do not experience the accepted definition of disability or dysfunction, and distress can be chalked to external stigma. However, despite its lack of the accepted defining features of a mental disorder, social acceptance is still indispensable for recognition. This conformance with the present social norms, views, and morals is what separates homosexuality, an accepted "difference" of sexual orientation; from pedophilia, a "disease" of sexual orientation, despite both conditions intrinsically not causing disability or dysfunction, and the distress accompanying it being generally a result of social morals and expectations.

A mental disorder cannot be discounted as a "disease" just because its characteristics are an intrinsic part of the character or that the individual accepts their condition. Personality disorders are testament to this, mental illnesses that run so deep that it warps the personality of the individual who carries it and therefore their perception. A hallmark of many personality disorders is "ego-syntonicity", meaning that they do not experience their condition as "wrong" and may actually accept and rationalize the behavior resultant from the condition. Some personality disorders may not be associated with dysfunction as traditionally defined: for example, those afflicted with psychopathy, while being unable to form emotional bonds (disability?), may be able to blend in and achieve great social success and do not consider themselves pathological. However, there is nobody arguing for accepting these individuals' condition, as it can be harmful to others, and the people who have it just plain suck.

Just because a condition, such as ADHD and ASD, occurs naturally and can be rationalized as a natural adaptation does not lessen its status a a pathology and constitutes a naturallistic fallacy: arguing that its occurrence in nature implies moral superiority. Intellectual disability is also a naturally occurring condition that has consistently been present throughout society in a certain proportion of the population. It is a relatively common condition, making the common prevalence of such a disabling condition puzzling, but other that its high co-morbidity with ASD if you consider ASD an advantageous condition, its evolutionary advantages are doubtful. We can also take the personality disorder psychopathy, with has apparent evolutionary advantages, but nobody who is morally sane and cares about morality would accept as a "difference".

I believe that people should not be stigmatized and sidelined because of any pathological condition: ultimately, we didn't have a choice in our condition or our God given ailments. but helping a disordered person overcome their condition does not mean having to accept their condition, whether physical or mental, as a "difference". Helping these people thrive in society does not imply that we should not cure them, as if curing them would make them any less of a person.

The article states, [t]he difference – and this is a big sticking point for neurodiversity opponents – is that racial or sexual orientation differences do not functionally disable a person whereas neurological differences can. That reality makes this situation much more complicated.

Is this true. If I were a person of color in an environment of severe systematic racism and felt that racism innately, giving me a deep sense of fear of rejection, that I act out subconsciously, leading to an inability to function. Is this the same thing as being at the end of the bell curve?

Maybe there is a close correlation between affect of being different and effect of being different.

Thank you for posting this article. Gives me a lot to think about. I spent my life wondering what was wrong with me. Why was it so hard to be 'normal'?

I slowly learned what things to hide because it made others uncomfortable or made me not fit in. I learned to fake it.

I'm a little surprised to hear that autism is considered a disease by many and needs to be cured. When I was finally diagnosed as autistic the psychologist told me I was fine and should just be myself. People should get used to me.

Like you I did not find out I was autistic until I was middle aged. I spent my childhood being asked what was wrong with me and "What are you? Stupid?"

I always thought (and still do) that I cannot control what other people do. I can only control what I do. So I would try to make changes to me so I 'fit in' with others.

I was happy to find out that I didn't need to change (I'd been trying unsuccessfully for decades). I can just keep faking it.

Your article made me think about how I compare to something like homosexuality. I have a brother who is gay. I've thought a lot about it and know it isn't a choice or a disease. It is unfair for people to not accept his sexuality. I never thought about whether it is unfair for people to expect me to change.